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How do you know Provenge is working?

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Posted 1/30/2014 2:04 PM (GMT -5)

Hello all,

First post. I finished my final provenge treatment on January 20th. I would like know how you can tell if it is working? Have any of you had it and it be successful?

I am sure this question has been asked before but I do not know how to search the forum.

I was diagnosed November 2010. Gleason score of 4 + 5. PSA of 2.1.

I had a radical prostectomy January 2011 with complications, bowel blockage and torn bladder, both required surgery. Doctor had a good reputation but I was the one he screwed up on.

Put on Lupron and Casodex. Lupron caused severe depression so taken off. PSA at .05

Remained on Casodex until November 2012. PSA rose to 4.0. Urologist took me off Casodex for a month thinking Casodex causing a false reading.

January 2013, PSA rose to 45.3. Test week later was 48.6.

Placed back on Lupron and Casodex. Tolerated Lupron better due to medication for bi-polar. PSA fell to 1.2.

September rose to 2.1, October 4.5, November 8.6, December 13.6.

Started Provenge treatments December 24th.

Now its a waiting game to see if it works.

Posted 1/30/2014 2:46 PM (GMT -5)
I don't think you can tell via PSA .
Your immunity will be fighting the cancer the rest of your life. One measure is how long you live. I don't know of another test.
Most patients move on to an additional treatment since Provenge is not a cure.
Good luck.

Post Edited (robertC) : 1/30/2014 12:56:22 PM (GMT-7)

Posted 1/30/2014 4:45 PM (GMT -5)
Hi JCRush, welcome to the Provenge club. If you go to the Provenge website and click on patient stories you will see my video. 49 Packard had Provenge the same time I did. We actually had our infusions on the same day only in different parts of the country. All I can tell you as that Psa continues to rise and then levels off. I had 14 progression free side effect free months. I was not comforter table with rising Psa so I took something to lower it
Posted 1/30/2014 6:02 PM (GMT -5)
JC:

I too did my last Provenge infusion on January 20th. My understanding is twofold:

1. the NCCN suggests that looking at scans is the main way to track success of Provenge. I got some baseline scans (CT and Bone) done last month before starting the Provenge.

2. My PSA is rocketing upward, so i'm actually starting on an off-label round of Zytiga in order to knock it back before it gets out of hand.

I'm also paying to go to Arizona and get the C11-acetate PET scan clinical trial -- perhaps they can find a hot spot or some reason why the PSA is going up so fast.

Good luck brother ...

Ray
Posted 1/30/2014 9:09 PM (GMT -5)
Patient blood may be tested for antigen presenting cell upregulation. This is identified by cell factor C 54. This was done during the clinical trials to measure immune response. It is unlikely to be done during contemporary treatment. This treatment is more subtle, if you will, than the target treatments we are more familiar with for any condition or disease which have specific targets in the body, organ or blood. C54 can be tested but I doubt your doctor or lab will be doing this. We must trust the longer term effects shown in the trials. This treatment is the first cancer immunotherapy and expecting to judge it by conventional measures is unfair.
Posted 2/12/2014 2:26 PM (GMT -5)
Thanks all for your replies. It's nice to know others care.
The oncologist told me at the end of the treatment not to expect any change in PSA so I was pleasantly surprised when my PSA dropped from 13.6 to 7.5. I am hoping it drops again when it is tested February 26th.
Here's a little more information on me and my condition.
I am 58 years old and have been married 40 years. Yeah, married at 18, she was 16, two wild kids who would not listen to their parents. I don't recommend it. I have 3 children and 7 grandchildren. I worked 23 years in a steel plant and am now a computer programmer. And oh, I was diagnosed bi-polar many years ago.
In January 2013, when my PSA rose to 48, my bone scan showed many bone mets. I counted some 21 spots in spine, pelvis, ribs,sternum, shoulder, elbow, well you get the picture. A bone scan in December showed the Lupron/Casodex had shrank them some but I did have three new ones. Fortunately I have not had bone pain. I continue my life as if I did not have the cancer.
I am grateful to have a supporting wife, of the many friends who support and pray for me, and especially that my bi-polar is being treated successfully. I know it is a major factor in me having a positive attitude in all this but it is hard not to think about it each day.
Posted 2/12/2014 3:00 PM (GMT -5)
A lot to juggle, glad you have a great attitude and many caring people around you. You appear to be hitting the cancer hard. Now it is time to trust that the subsequent treatment will be more effective because of the Provenge.
Posted 2/12/2014 9:07 PM (GMT -5)
Hey JCRush,

Late welcome! I missed your first post a few weeks ago. There is a lot of interest in the results that guys here are getting from Provenge, especially those of us whom see it as a bullet in the chamber.

I didn't see you added to Jerry L's list yet, on the thread www.healingwell.com/community/default.aspx?f=35&m=2948232. Maybe he'll stop by and pick this up, or you can reply directly to that other thread.

Will be interesting to hear what your next PSA is, but more interesting to know how you continue to feel.

My best to you,
Posted 2/12/2014 10:06 PM (GMT -5)
Adjust - thanks for the heads up...Will add him..

JCRUSH - you bet we care...a whole bunch of us here care... You might want to look into xofigo as an option down the road...seen some impressive results with bone mets... glad you've able to get Provenge...
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